Little angel Niuniu

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â€śMom, can I touch the stuffed steamed bun? I wonâ€™t eat it, just touch.â€ť Four-year-old Wang JiachengNiuniu, nicknamed Niuniu, said to his mother while desperately eager for a bite of the steamed bun stuffed with meat in front of him. Half a year ago, Niuniu was diagnosed with late stage neuroblastoma. Since then, he has undergone chemotherapy treatments which cause him to vomit constantly and make it almost impossible to eat anything, especially meat. Yan Hongyu, Niuniuâ€™s mother, cast a bitter smile at her sonâ€™s naive request. She was still struggling to believe that her boy had to suffer such a great deal in his childhood.

I came across Niuniuâ€™s story while doing research to find a family for an in-depth picture story on Chinaâ€™s healthcare policy. Before I met them, I did some searches and found out there weren’t many treatments available in China for neuroblastoma, which is a neuroendocrine tumor arising from any neural crest element of the sympathetic nervous system. This cancer has a more successful treatment rate if the patient is less than two-years-old. But in Niuniuâ€™s case, the risk is much higher. Nonetheless, Niuniu had surgery to remove the tumor. After that, he would have to completely rely on chemotherapy to kill the cancer cells.

Knowing the chances were slim, Niuniuâ€™s parents committed to the treatment with 100% faith. Yan quit her job in Yancheng, Jiangsu province, and took her son to Shanghai for better medical services in early 2013. They rented a 10-square-meter small apartment near the hospital, and since then have been rushing between the two places. Niuniuâ€™s father, who used to own a small company in Yancheng, recently sold the company in order to pay the bills. He was still taking some jobs in their hometown to make ends meet, but whenever he had a chance he would go to Shanghai to help his wife. â€śNowadays, people just cannot afford to get sickâ€ť Yan said as she chatted with other patientsâ€™ relatives in the hospital. Before Niuniu fell ill, they were a happy upper-middle class family. But now the estimated cost for the entire treatment is over 300,000 yuan (48,991 USD), and the insurance can only cover as much as 80,000 yuan (13,064 USD). A huge financial burden, restless nights while taking care of Niuniu and mental anguish – none of this matters to Yan. â€śNothing is worse than seeing my son suffer everyday,â€ť Yan said. â€śI would rather myself being sick.â€ť

Niuniu is not the only child in the family – he has a younger sister. Probably because of his role as an older brother, he has showed much more courage and maturity than most children of his own age. I clearly remember the second time we met at the hospital; Niuniu was getting an injection. Right after the nurse stuck the needle in his arm, he burst into tears. But at the same time, Niuniu said to his mother, â€śMom could you stand in front of me to block me? I donâ€™t want the other kids see me crying.â€ť

The doctor, who wasn’t very optimistic about Niuniuâ€™s case, urged Yan and her husband to be practical and to think about moving on. But every time they saw Niuniuâ€™s face, or every time they touched his bald head, it made it harder and harder for them to give up. She confessed to me one day, â€śSometimes I really regret bringing him into this world to suffer from the sickness. I know as a mother it is very inappropriate to have such feelings, but I just feel so guilty.â€ť

My original plan was to try to document the life of this family with as much as respect as I could and as a professional outsider. Hoping that at the end of the day I would have enough good material to make a strong picture package. But as the days went by, I simply couldn’t stop my sorrow from emerging. I felt deeply sorry for Niuniu. He was like a little angel except that the disease had taken away his wings. Whatâ€™s worse, is that tens of thousands of other families are suffering from similar issues all over the world. After being part of this project, I could see their struggle and I could feel their agony.

My deepest regards go to Niuniu and all the fighters around the globe. Get well soon.